My name is Ashley. I am the grateful mother of three beautiful children. I am also an attorney with my own estate planning practice in Ann Arbor–Treetown Law, PLLC. As an estate planner, it is my job to imagine all the things that could go wrong so that my clients can be prepared for whatever life throws their way. As a mom myself, I am passionate about ensuring that parents with young children have a thorough and thoughtful plan in place. I regularly counsel clients regarding end-of-life decision-making and create advance directives as part of my practice.

Despite all of this experience, it never occurred to me that anyone would have to engage in end-of-life planning for their baby. 

In January, our third child, Viggo Rick, was born at 32 weeks gestation. He spent 40 days in the NICU, during which he underwent surgery, testing, and other procedures. Genetic testing revealed that he has a severe and extremely rare condition, Trisomy 5p Full Arm, or Full Trisomy 5P (T5P). T5P is associated with treatment-resistant epilepsy, a fragile immune system, respiratory issues, and global delay. Children with T5P do not talk, eat, or walk. Life with T5P includes frequent ICU hospitalizations for normal childhood infections.

Full T5P is so rare that there are only 40 cases in the medical literature; it is estimated that the condition affects fewer than one in 100 million live births. Viggo's mutation is de novo, meaning it is not inherited and spontaneous. Routine prenatal screening did not raise any red flags.

Viggo's airway is half the diameter as that of a normally-developed infant, and the smallest effort (such as crying or kicking his legs) can leave him in respiratory distress and at risk of collapsing his lungs. To survive, he requires 24/7 skilled care, a high-flow nasal cannula, a feeding pump, round-the-clock nebulizer treatments, and frequent suctioning.

Our goals for Viggo are that he feels loved, safe, and comfortable for as long as he is with us Earthside. We are grateful for every minute we have together and hope for many more beautiful days. Viggo is on pediatric hospice.

As a result of Viggo's care needs and a severe shortage of in-home nursing providers, I have had to put my law practice on hold and I am unsure when and in what capacity I will be able to return. My husband started a marketing firm last fall, and it is still in a growth stage. In the meantime, we are learning that the costs of caring for a medically-fragile child can add up, even with the wonderful benefits available through Medicaid and Michigan's Children's Special Health Care Services. If you feel so led, we would appreciate any donation you can provide to assist us in this challenging season of life. Our first priority is to purchase and install a generator to keep Viggo's life-sustaining machines running in the event of a power outage.

Viggo is an enchanting baby who loves to snuggle, listen to music, and lock eyes with his mama. He has taught us that love and connection are not correlated with physical time together. In the four months since his birth, Viggo has cracked open our hearts and reorganized our lives. It is an honor and privilege to call him our son.

When my husband and I are again in a position to give, we plan to focus our generosity on helping families in situations like ours. For now, however, we are learning the beauty and humility of receiving.

We deeply appreciate that you have taken the time to learn about Viggo's story. If you would like to follow our journey, you can find me on Facebook and Instagram @momherenow.

Thank you for your generosity. May you and yours be blessed.

With gratitude,
 
Ashley